Abnormal Esophageal Motility, Achalasia, LPR

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JenLL
New Member


Date Joined Sep 2013
Total Posts : 9
   Posted 10/17/2013 2:43 PM (GMT -6)   
Hi! So, I've been reading a lot here, but this is my first post, and I'm looking for others that have been through the same/have any advice for me! :-)

I'm 31 years old, and I've had pain near the top of my throat for over a year now. I also have tenderness on the right side when you press my throat, and some hoarseness of voice. In Feb I saw an ENT/oto for the first time, he said my vocal cords are scarred and dx as LPR, and I began omeprolazole, 40mg, then upped to 80mg (40mg 2x/day).

Not much change, switched Drs, and new Dr actually sched tests. I did barium swallow, which shows "Markedly abnormal esophageal motility" and "Marked reflux to upper esophagus" (esp when I laid down during test), but no narrowing of esophagus. Barium cookie swallow/swallowing study was within normal limits. Manometry showed abnormal motility in lower esophagus.

So this Dr dx as achalasia and referred me to GI, and I'm waiting for them to call and sched that appointment. My mom actually had severe achalasia that was recently diagnosed, and she ended up having emergency surgery, as she was no longer keeping down liquids and her esophagus became grossly dialated. So unfortunately, I'm recently somewhat familiar with extreme achalasia. cry

I would love to hear from others with achalasia or other esophageal motility disorders. I'm curious as to how this Dr was able to say it was achalasia, being that I don't have any narrowing where my esophagus meets the stomach; does anyone else think this is weird? Part of me still worries that its something even worse, like scherloderma. Also, does anyone know, what can I do to prevent my motility from worsening?? Are there certain foods/etc that make my motility get worse over time? I'm already trying to follow a mostly soft-foods diet, but I still haven't been able to get myself to give up caffienated beverages. Do you think I should avoid all alcohol? (part of me wonders if this could cause nerve damage in the espohagus?) I just want to do whatever I can to prevent my motility from worsening, like it did with my mom.

Also, any thoughts/opinions on treatment options that worked/didn't work for you would be helpful, as I'm assuming we'll start discussing my options at my next appointment!

Thank-you in advance for your advice and support!!
Jen

GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 174
   Posted 10/17/2013 6:20 PM (GMT -6)   
Hi Jen,

I'm 29 years old and in the same boat as you, just about. I'm still waiting on a barium swallow test-- going for that one at the end of November, but my manometry showed routinely low motility at the lower 2/3 of my esophagus. My Bravo test showed non-pathological levels of acid, but I have esophagitis that showed on a biopsy and symptoms that corresponded with what acid reflux that test did show, suggesting that I am having problems with acid and I'm either hyper-sensitive or the test didn't pick it up.

I haven't had any real issues with swallowing that I can tell, so this threw me for a loop. Did your doc do a biopsy during an EGD to test for inflammation (reflux esophagitis or eosinophilic esophagitis) that could impact swallowing? The inflammation from reflux esophagitis is what I'm hoping is causing my swallowing abnormalities, but I guess I don't really know for sure. I'm also worried about achalasia as a possibility, but I had recently done blood work related to other autoimmune stuff and so I've already ruled out scleroderma (one less thing to worry about). If I were you, I'd get that ruled out with some blood work-- your doctor ought to do that before settling on a definitive diagnosis, I think. Does achalasia run in families?

I've given up caffeine for four years now (take a moment of silence for this one- I'm a writer, and I miss my coffee- I don't even do decaf), and lately I've cut out all alcohol in the hopes that it will help my esophagitis to heal between now and my next swallowing test. Are you on PPis? Mine have stopped doing the job, but maybe switch brands or up the strength if you haven't gone that route already.

Good luck to you!

GC

JenLL
New Member


Date Joined Sep 2013
Total Posts : 9
   Posted 10/17/2013 9:07 PM (GMT -6)   
Thanks so much for your reply, GC! It's reassuring to hear of someone going through very similar experiences, and at a similar age; I feel like 29/31yrs is so young for us to be having these kinds of problems. It makes me concerned for what my esophagus will be like when I'm older, if its already this bad.

I have not yet had an endoscope done, so no biopsies or confirmed esophagitis yet. The ENT just did a little tube through my nose to look at my voicebox. I feel like I would have some degree of esophagitis though, because I have problems drinking anything acidic; as in it hurts/burns as it goes down while I'm drinking it, so I'm assuming that my esophagus is inflammed/irritated. Do you have any pain/burning while drinking liquids, like lemonade?

I hope you're right that inflammation is just causing your swallowing problems. That would be so much more manageable/less scary! Maybe there's hope that that's my problem, too.

Thank-you for recommending the bloodwork; it would be nice to have the reassurance. I will definitely ask for it when I go to the GI Dr. From what I've read, it seems like they don't really know what causes achalasia... that its not necessarily considered genetic, but there does seem to be some tendency for family members to get it, if that makes any sense.

Way to go on the caffeine!! I really should do that, it definitely wouldn't hurt! Maybe tomorrow...
I take omeprolazole, I think it helps some, but not great. I would like to try switching to see if that helps. Do you have any PPIs that you found to be more effective (or worthless)?

Thanks so much for your support!! It really means a lot! I'm interested to hear how your testing goes, too. Good luck!! :)

GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 174
   Posted 10/18/2013 1:45 PM (GMT -6)   
Hey Jen,

Sometimes I do get discomfort when I swallow things that are too acidic, but mainly I feel it after I've eaten a big meal and especially at night-- often it's an hour or two after eating that I can feel the chest pain the most. It totally sucks being this young and dealing with these issues. Maybe consider it practice for when we actually do get old and everyone we know starts experiencing this crud for the first time? We'll definitely know how to work the medical system at least...

I had been on omeprazole 20 mg once daily for a long time and that helped until April, when things went haywire for whatever reason. I upped it to 40mg, nothing. I switched to pantaprazole 40 mg, nothing, and then I tried dexilant 60mg, which has worked better than anything else, but still not perfectly. Definitely try switching PPis- I've had doctors tell me that for whatever reason, you can respond differently to different ones. The only thing about dexilant, is it's expensive. I had a drug card that made it affordable for the first couple of months, but now it's expired and it's a whopping 150 dollars a month because there's no generic, and the insurance companies don't understand that one PPi can work differently from another. Still, it's the best option I have right now, so I'm sucking it up and paying for it. Maybe your insurance company will work differently, though...
One other thing I'd suggest in terms of blood work- especially since you didn't show signs of narrowing typical of achalasia, I would also rule out an issue with your thyroid, as uncontrolled hypothyroidism can lead to dysphasia and a slowing down/dysfunction of the muscles in the digestive tract. I have hypothyroidism, but I think I'm well enough controlled on meds that it shouldn't be causing the issue for me. Still, my esophageal specialist doing the swallowing test mentioned that patterns like yours and mine can be caused by thyroid issues. Exhaust all the possibilities before accepting a diagnosis like achalasia that requires major surgery and lifestyle changes!

GC

JenLL
New Member


Date Joined Sep 2013
Total Posts : 9
   Posted 11/1/2013 2:58 PM (GMT -6)   
Thank-you so much for your reply, and sorry it took me so long to respond! I read your reply right away, and thought I had replied (but obviously didn't!) blush

That's really interesting what you said about thyroid issues, as my mom is also have problems with her thyroid along with the achalasia. I did request to get bloodwork done to rule out autoimmune or thyroid causes, and they finally called me back on Tues to report that all was normal. Now I just wait to have my upper endoscope done next Tues, then see what else they have to say.

They did start me on a Calcium Channel Blocker. Apparently this will help relax the muscles in my esophagus enough to allow food to pass. It seemed to work well for the first few days (I even went out to eat!), but the past few days have been really bad again, so I'm back to soft foods only, which is so hard for me to stick to. I wonder if the reason why its been bad for several days has to do with the pill be unable to get to my stomach if there is already retained food in my esophagus. So maybe something got it backed up, then I wasn't able to swallow my medicine properly so it never made it to my stomach and didn't work, then my esophagus is back to being tight. So I'm *hoping* once I get everything to pass by eating soft foods, that calcium channel blocker will start working again. It would be so nice for something as simple of this to work for me!

How about you? Have you had any new news or changes in your motility? I really hope your are doing well! Thanks for your advice & support!

GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 174
   Posted 11/1/2013 3:27 PM (GMT -6)   
Hi JenLL,

I don't have much new to report yet-- I just saw my internist yesterday and got her all up to date on my GI tests, and I had her run more thyroid blood work- the complete panel this time that checks both the TSH (number that reflects how much T4 is in one's system (synthetic T4 is what's in the thyroid pills like synthroid/levothyroxine that I'm taking) and the ratio of free T4 to free T3 (T3 is what your body converts from T4 in your liver (?)). T3 is what your body actually uses to control temp/smooth muscle/metabolism etc... in the body, so I'm wondering whether I'm converting the T4 meds I'm on efficiently enough for them to be useful.

I'm definitely shedding way more hair than usual, so it seems something's not quite working thyroid-wise... I'm really curious to see if the test will turn up any leads. If it does turn out that I'm out of whack, there's the possibility of adding in a T3 medicine that could help balance it out and see if that makes a difference for my GI issues.

Like the calcium blocker you're on, it would be GREAT if I could just tweak some meds and fix the problem.

I hope the soft food diet for a few days works for you- it sounds like a good track to take!

GC

GroverCat
Regular Member


Date Joined Mar 2013
Total Posts : 174
   Posted 11/1/2013 3:40 PM (GMT -6)   
Whoops! Just got that call from the nurse.

My TSH (mine is 5.5 with an acceptable range of .2-4.2) shows I need to up my dose of T4 synthroid, and my T3 is at the lowest end of the range of acceptable right now at .8 (acceptable limits from .8-2)... Sooo I guess I'll try just taking the higher dose of synthroid, and we'll see what happens in another month once my levels should be up again... At the very least, maybe it can stop my hair from thinning (!)

Mildly hopeful,
GC

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 4/28/2014 3:21 AM (GMT -6)   
Grover cat,

I know this is an old thread, but did your consultant explain if your reflux made your motility worse in the lower third of your oesophagus?
Thanks
Pink
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